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FD/MAS Research Priorities Workshop
Agenda

May 2nd, 2026

FD/MAS Alliance is hosting a Research Priorities Workshop in Philadelphia, PA,  thanks to the generous support from Dr. Eric Liao and the Children’s Hospital of Philadelphia (CHOP).

This one-day meeting of patients and researchers aims to inform and shape the FD/MAS research agenda and is designed to integrate two critical perspectives:

  • the lived experiences of patients, which highlight the most pressing needs and challenges, and

the expertise of clinicians and researchers, which provides insight into the current state of science, available treatments, and future directions.

Working Agenda

8:30 am – Welcome from FD/MAS Alliance
9:00 am – Patient Priorities – A summary of the community-wide survey
9:30 am – Patient and Caregiver Panel – Speaking to their priorities and the experiences that have shaped those ideas
10:30 am – Discussion to generate a list of themes and ideas
11:00 am – Break
11:15 am – Research and Clinical Care Panel – Moderated by Dr. Michael Collins

    • Alison Boyce, MD, National Institute of Dental and Craniofacial Research
    • Alexandre Arkader, MD, Children’s Hospital of Philadelphia
    • Scott Barlett, MD, Children’s Hospital of Philadelphia
    • Roland Chapurlat, MD, PhD, University of Claude Bernard (France)
    • Mara Riminucci, MD, PhD, Sapienza University (Italy)
    • Xuefeng Zhao, PhD, Sichuan University (China)
    • Jaymin Upadhyay, PhD, Boston Children’s Hospital

12:30 pm – Discussion to refine a list of ideas and themes
1:15 pm – Lunch
2:15 pm – Breakout Group Discussion – based on clustered topics from the morning agenda
3:00 pm – Large Group share out and consensus building
4:00 pm – Final Reflections – priorities drafted and suggested next steps
4:45 pm – Closing

 

 

2026 FD/MAS Research Priorities Workshop

Patient & Caregiver Voices Needed

This meeting will bring together key stakeholders from the FD/MAS community to exchange perspectives, discuss key challenges, and work together to help identify research and community priorities.

At this time, the call for Community Speakers has closed.

The perspectives of the entire FD/MAS community are central to shaping the discussion. To ensure every voice is represented, we opened a community survey where patients and families can share their experiences and priorities. After five months of promotion, the survey was closed with one hundred and five responses. Thank you to all those who participated.

These insights will be synthesized and presented during the meeting, ensuring that the agenda reflects the collective voice of the community and not only those present in the room.

Support the Workshop

The FD/MAS Research Priorities Workshop is made possible by donations and sponsorships. Your tax-deductible individual donation or organizational sponsorship will help ensure that this Workshop is a success, promote the advancement of evidence-based research, and amplify the voices of people living with FD/MAS.

To learn more about sponsorship opportunities, reach out to Tovah Burstein or make a gift here. In such a small organization, every gift goes a long way.

Hosted by

 

 


With Thanks to our Planning Committee

Chair:
Michael Collins, MD, Scientific Advisory Council Chair

Tovah Burstein, FD/MAS Alliance Interim Executive Director
Kelly Cohen, FD/MAS Alliance President Emeritus
Anne Corvelle, FD/MAS Alliance Board President
Nicola Deeley, FD/MAS Alliance Board Vice President and Patient Advisory Council Member
Eric Liao, MD, FD/MAS Alliance Board Director
Carmel Shemmesh-Rafalowsky, FD/MAS Alliance Board Director

Thanks to our Sponsors

 

Conference Safety Protocol

FD/MAS Alliance will follow CDC guidelines to ensure the safety of all participants in this event. Please check back in for details as the Conference approaches.